Imagine living every day of your life waiting for your child to have his or her next seizure. This is often the reality for parents of children with intractable, or drug-resistant epilepsy – a chronic form of epilepsy that can’t be controlled by medications alone. Every moment is filled with uncertainty, and the world quickly becomes a place filled with barriers where hope and opportunity used to be. This scenario is something with which Page Runels and her husband, Kelly, are all too familiar. When their son, Joe, was diagnosed with epilepsy after having his first seizure at just two months old, this became their family’s world.
“I’m amazed at Joe’s strength,” said Page. “For the last 18 years, we have tried everything from medications to treatments to surgeries but just felt like we were getting lost in the system and there was no end in sight.”
That was, until the middle of June, when they traveled 500 miles from their home in Georgia to seek treatment at WVU Medicine Children’s with the hope of ending Joe’s seizures for good.
Providing hope, help, and relief
Upon arrival at WVU Medicine Children’s, which is the only hospital in West Virginia that is a Level IV accredited Epilepsy Center, Joe underwent surgery utilizing a surgical robot to precisely place electrodes into specific areas of various depths in his brain with the hope of identifying the precise spot where his seizures originated. Following several days of recording from the electrodes while in the Epilepsy Monitoring Unit, his seizure-onset was identified in a deep structure of the brain called the insula.
“For 18 years, we have never heard hope,” Page said. “We have never felt hope before we came to WVU Medicine.”
Joe underwent laser thermal ablation, in which a small laser fiber was placed on the epileptic brain tissue, allowing the tissue to be removed without opening the skull. He was discharged the day after his procedure.
Joe came out of the surgery in high spirits, posing for a photo with his good luck charms, Elf on the Shelf dolls, Rosie and Jingles.
“The surgery went so well, and we couldn’t be more pleased,” Page said. “For the first time in forever, we felt hope and relief. The WVU Medicine team gave Joe his quality of life back.”
The hope is that Joe’s frequent seizures will cease, and that he will eventually be taken off the multiple epilepsy medications he currently takes. He is very much looking forward to playing basketball.